I don’t want ds autism test redone ? Can I refuse

[Seventhirtyanditsearly]

Ds has a diagnosis of ASD (private) as the waiting lists are so years and we were told his referral would be rejected anyway as he wasnt at any kind of nursery or school setting (?)
Since starting every time we discuss something and mention asd we are told ‘no he’s doing that because he’s little ‘ or ‘this is typical 2 year old behaviour it’s nothing else’

We knew there was something so we pushed ahead privately so we had the diagnosis as could then access more help while he’s still really young (2).

Now the nursery and HV have told us that they are referring to get a nhs neurodevelopment assessment (isn’t this an ASD assessment ?) we have declined saying he only just had one !!! They want it done I feel like they are querying his private diagnosis? (It was done in accordance with NICE guidelines so it’s valid)

What can I do ?

Schools and LAs cannot refuse to accept an independent assessment/diagnosis just because it is private, and SENDIST most certainly do accept independent assessments.

What kind of support are you wanting (genuine question)? Support in nurseries is based on needs, not diagnosis. Does DS have an EHCP?

A neurodevelopmental assessment may not just be looking at autism, but at the whole picture. DS may have co-morbidities.

Hi OP. I’m sorry you’re going through such a stressful time trying to get support for your son. I work in CAMHS and would suggest accepting the referral for an NHS assessment. It is very possible the NHS autism team will endorse the private report if it is as valid as you believe - the waiting lists are very long so NHS autism teams rarely want to re-assess someone if they don’t need to. If the NHS service recommend a further assessment (either due to the quality of the report or perhaps the age of diagnosis) it would be worth pursuing this as NHS reports (or NHS endorsed reports) are often required by education/local authorities. Sadly this is because some private assessors do not follow the guidelines leading to blanket policies of not accepting private reports.

Every time I see a thread about private diagnosis you can guarantee @Nimbostratus100 is on it shouting the loudest whilst knowing fuck all.

Embarrassing really.

There was a course the local authority runs but you can only go if you have a diagnosis, also speech therapy and OT.
We haven’t got an EHCP but think we will probably need one

what makes me think private diagnosis are not valid? the number that end up contradicting each other, the children that get carted round for a different diagnosis each year, and each one invalidates the last one, the number that are overturned by an NHS assessment........

yes, the diagnosis might be valid. But send it in to a school, and who on earth has the time to evaluate it, check the author, check their standards, check their qualifications, etc etc etc - it is not going to happen.

You have to understand the sheer numbers we get, the sheer pointlessness of many of them, and the sheer PROVEN inaccuracy of many too - not worth the paper they are written on to a school. HOnestly, I have had whole filing cabinets full sitting in the corner of the office - who has got the time to read a whole filing cabinet full of random reports from random induvial, full of information irrelevant to the school in man cases anyway

I once had a whole drawer of assessments done over a number of years for one child, who regularly got new ones, and new diagnoses, she had no difficulties at school and didn't need any intervention at all, went on to high marks in GCSE and A levels - I remember her in particular because when rummaging around in her drawer at one point I came across a line in an assessment which read something like "Rs main problems stem from the issues she has with having been assessed so much"

God that sounds like a shit school. Not my experience of working in schools at all.

Have it done. It will benefit your DS in the long run. He will not be traumatised

I am speaking from experience, and hoping to save parents thousands of pounds poured down the drain in wasted private assessments

not "A" school, but around 20 schools I have been involved in as a teacher and advisor over the last 30 years or so. Probably more than 20, I have not counted them up

My son nhs autism assessment was seeing the paediatrician twice, first time was just taking history 2nd time was just at update and we saw salt for about an hour. We didn’t have an mdt meeting paediatrician just phoned up and told me diagnosis over the phone. I got the feeling he just wanted to diagnose and discharge as fast as humanly possible. I’m not saying it’s wrong but I think there are possibly other issues going on thst weren’t picked up (adhd, anxiety) as it was such a focus on diagnose and discharge. I didn’t even get a report of findings just a letter stating diagnosis. Ppl I know who have gone private got much more thorough assessments and reports

Tricky. I'd move nursery for starters. I'd still accept the nhs referral.

Please take the offer of the NHS assessment. DD is on the pathway and gas been offered SLT, help with ARFID, Dyslexia Screening and Genetic testing.

I think you'd be mad to turn it down.

Agree that the Nursery sound crap if they think that a 3 hour tantrum over a display being changed is normal 2yo behaviour.

Is there an SEN nursery he could go to?

A friend of ours took legal advice and was told that she had a good case for
her child’s school acting unlawfully by trying to not accept a private diagnosis. When she let the school know she had taken legal advice and was willing to fight if necessary, the school decided the further assessments were not needed and engaged with her and the private diagnosis.

Our child was diagnosed privately, we couldn’t wait the 4 years we were told it could be with the NHS. We’ve had no issues with the school accepting it and our child has an EHCP.

The assessment process was long and very hard for our child (and us). There’s no way I’d want them going through it again. It was very thorough.

It’s just a way of fobbing you off and delaying things with the early intervention. If they want to redo the assessment ok but it shouldn’t be used as an excuse to not start early intervention now

I think what’s clouding my judgement is the way the nursery have spoken to me - they’ve presented it in a way that seems accusatory and it’s really really upset me .

I think I do need to take him out of the nursery as I feel now that even if he’s assessed on the nhs that the nursery can’t undo 3 months of talking to me how they have done it’s been really upsetting plus I’m really not sure he’s getting the input he needs from them to help his develop and that was the whole point of sending him

Personally I would take the refferal and discuss things with the peaditrican and they will decide what the best route is.

ds was diagnosed with autism on the NHS but the wait for the adhd diagnosis was causing issues so we paid privately, we took that to his nhs peadiatrian who alongside a couple of questionnaires was happy to confirm the diagnosis and treatment was provided on the nhs.

Unfortunately you’ll have to grow a thick skin and get used to it as you’ll have this constantly for the next 18 years plus, try and join some local autism groups both face to face and online to meet people who truly understand

So thankful that my school don't have someone like them working there! Scary.

I agree you should take him out of this nursery. You should also initiate the EHCP process so that it is in place for the next nursery, which will hopefully be much more supportive.

I agree.

I know so many parents who have had their child diagnosed privately due to the long waiting lists. I’ve only known one have an issue with a school trying to not accept it. And as I’ve just said in my op, they backed down. It seemed to be an issue with the SLT/SENCo who have no mostly been replaced.

Apply for an EHCNA yourself, on their website ISPEA have a model letter you can use. If the LA agree to assess the needs assessment can include a SALT and OT assessment. And with an EHCP it can include ongoing SALT and OT in excess of what would otherwise typically be available without the need to sit on the normal waiting lists.

You don’t need a diagnosis for SALT and OT.

Has he got an ECHP or gave you applied for one?

Exactly this. Otherwise those with money will get priority for services. Two is also very young. My step son was privately diagnosed as ADHD at around 5. It’s cost a fortune in medication and regular appointments over the years. The parents would have been better to have waited for the NHS.

If it were me personally, I would accept the referral and appointment simply because they have stated they want a neuro developmental assessment.
I know that you already have a diagnosis in place but the way you’re writing makes me think that you specifically went for an autism assessment?
I would get the neuro developmental assessment completed because they may well pick up on other things such as speech and language disorders, developmental delays etc.
Your Dc is 2, unfortunately everything from now on is likely to be a battle.
It sounds like he will need an EHCP at some point and the more evidence you have for this the better.
Refusing things because you don’t want you DC upset now may actually cause more problems and upset later down the line when he starts mainstream school and struggles.
As soon as he gets too old for early years interventions the waiting times for everything become even longer.
If it were me I’d take everything offered at this point.

@Nimbostratus100

I am speaking from experience, and hoping to save parents thousands of pounds poured down the drain in wasted private assessments

You have been really dismissive of private assessment and suggested that if you pay for one you get a diagnosis, which is absolutely not the case. If you take a cross section of the general public and out then through private autism assessment there will more likely be more come out without a diagnosis. But the people who actually go for private tend to be those who already know they or their child is autistic, hence the high percentage of assessments resulting in diagnosis. As it happens my own DD wasn't diagnosed privately, they said they didn't have enough evidence but the NHS used her diagnostic reports from them to diagnose her. So they don't just give you what you pay for as you have suggested many times on threads like this.

I think the biggest problem here is the school you work in sounds utterly shit.